Waiting game

So I had my big appointments today.

As usual I was running later than I would have liked, but I still had time to have my labs drawn before my appointment as scheduled. Unfortunately the valet parking line was ridiculous (I let Geoff deal with the car and we met up in the cancer center/lab waiting room) and the wait for the cancer center lab was even worse. By the time I finally got in to have my labs drawn I was almost a half hour late for my appointment. This led to someone hunting me down while I was having my port accessed so they could figure out how to handle my appointments.

In the end it was decided that both of my appointments would be combined in the gyn oncology department. This meant we only had to go to one place and more importantly I only had to have one pelvic exam (still one too many).

As usual, lab had difficulty with my port. I'm not sure that it was actually the port this time or if it was the phlebotomist I had. She is super sweet, but definitely not as comfortable with ports, or my port, or maybe it's me. Whatever. In the end, I still had to have another person come and take a look at my port and then all was ok. It drew back (aka they were able to get blood samples via the port) and then it flushed and then I was done with it for now.

Once I was done with lab Geoff and I hurried downstairs. We arrived just before 11:30, the originally scheduled time of my second appointment. We were taken back to a room right away. Once my vitals were taken and I answered the usual million questions we were on our own for about 15-20 minutes. First to arrive to our party was my radiation oncologist and her resident (he has been with her through all of my internal radiation treatments and Geoff and I like him).

We spent a few minutes talking about the fact that I am having some issues with numbness and tingling in my extremities, mostly my hands. It is driving me nuts and waking me up at night. I know it is a potential side effect of my chemo, but I wasn't expecting that it would happen this late. Apparently this is completely typical and hopefully it will go away but it might go away as quick as it appeared or it might take a few months (d8%mit!!!!). If it gets worse then I'm supposed to let them know. There are meds I can take, but even though it is driving me nuts right now I really don't want to at this time.

While I was going through a run-down of neuro checks with the resident the rest of my party arrived. So now it was Geoff and myself with my radiation oncologist, the resident, the gyn oncologist, and our super hero NP. It was decided that everything would get tabled temporarily so they could do the necessary exam and we could go from there. I was given a few minutes to change and then the whole party group came back.

So let me be clear...it was great that I only had to have one exam, BUT that one exam was with a whole party in the room. Everyone in the room has already seen all there was to see, but it still didn't make me at all happy. I tried to have a good attitude about it and I thought about an episode of one of E's favorite shows...instead of party in my tummy, I giggled that there was a party in my pants...

http://www.youtube.com/watch?v=6Os-CACRwM8

Really it wasn't funny though.

I did what I usually do during these exams and tried to ignore the exam part by playing on my iPad and halfheartedly listening to the words that are being said. In the end both oncologists did their own exams and everyone else but Geoff had a peak. My radiation oncologist decided the spot in question has shrunk again, but it still isn't gone. She asked my gyn oncologist what he thought about more chemo and he immediately responded with something along the lines of I think it would be a good idea. Then the tears started to well up in my eyes and the NP shooed all the doctors out of the room for me to get dressed.

While I got dressed and regained some composure they pow-wowed in the hall. Meanwhile I freaked out. The next round of chemo is another set of 6 doses, but this time they would be 3 weeks apart. In other words it would be 18 weeks of chemo. I would lose my hair. It is another platinum-based chemo so it is very likely I would continue to have similar adverse reactions.

I have no idea how I would go back to work since I technically don't have a position anymore. How can I apply or take a job and say well, I will be happy to work, but every 3 weeks I'm going to need some time off for my sick days. At the same time, it would difficult for us to financially handle another 18 weeks+ of me not working.

I didn't mention it yesterday because I didn't realize it at the time, but one of our bathrooms flooded into our living room while we were gone for the weekend. The ceiling in the area is damaged, the carpet is soaked, and beyond that we don't know if there is more damage. No matter what, it's frustrating. We have called our home owner's insurance and initiated a claim, but unfortunately it seems things like this never stop...A few weeks ago it was our bed. Now we are sleeping like college kids with our mattress on the floor. Not the end of the world. Actually it works better with Ella, but at the same time it looks pretty ghetto. Oh well, it's only temporary.

After I was dressed, my radiation oncologist and the resident came back in to talk with us. She explained that everyone came to a consensus. The plan is that I will come back in two weeks from tomorrow, Nov. 6th. I will have another MRI and another physical exam/pelvic exam with my radiation oncologist. Then the results from the 6th will be discussed on the 8th at another Tumor Board Review which is when a final decision about the plan will be made.

Although the spot on my cervix has shrunk considerably it is still there, and if there continues to be there or there is any other residual effect I will have a completion hysterectomy on Nov. 13th (3 weeks from tomorrow). It is already scheduled. Actually it was scheduled a few weeks ago.

This was what I was anticipating hearing today. I'm actually surprised that they are giving me a few more weeks. Geoff and I figured I would no longer have a uterus by Thanksgiving and we are still guessing that will be the case. I promise I'm staying positive, but this is my reality.

Tumor board review will be the deciding factor for everything. I don't want the surgery and I really don't want the chemo, but once again I'll do what I have to do. Fortunately at this time they have decided to lean towards just the surgery, but we will play the waiting game and see how things go in a few weeks.

After we were done with all these discussions our NP stayed with us for over an hour talking in more detail about sexuality. I love her, and what she needed to discuss with us is very important, but it is about as comfortable as having a two-on-one high school sex education class. I mean I'm married and in a monogamous relationship. I really never thought we would have to discuss anything related to our intimacy we didn't want to.

Much of this has been discussed extensively with us at this point. I've toyed with whether I wanted to put any of this on the blog before, and today I decided I would. (note: this isn't details about us...this is related to cervical cancer and sexuality). Unfortunately pelvic radiation can cause the vagina to shrink. Throughout treatment the importance of using a vaginal dilator/vibrator is discussed. At the end of therapy I was given a vaginal dilator. Vibrators actually are better for reducing vaginal shrinkage and encourage increased blood flow (I'm sure you really wanted to know this), but the practitioners are not allowed to bill for the vibrators so they sell them in the UW pharmacy and/or UW works collaboratively with a local store.

http://www.thedailypage.com/isthmus/article.php?article=37561

My NP decided that we should see the selection of vibrators and talk about them. She also brought samples of lubricants and basically kept talking until we reluctantly participated in the conversation. She is awesome, but it was so uncomfortable. At the same time, it was invaluable. She was very helpful as was the information she gave us.

The reason I finally caved and put the info about the sexuality discussion on the blog is two-fold. Number one, there are an amazing amount of nurses/doctors and other healthcare professionals that read this blog. It is important for everyone to know that no matter how painful those discussion are and how unresponsive the patient(s) may seem, what you are doing is important and most likely, appreciated. Reason number two is possibly the most important. When I started this blog I wanted to share what this experience is like. There is no way I can give a full perspective of this experience, but there are things I can share. All of it is hard. There is a lot on our minds.

These are the things I think about. I was originally the one that wanted three kids. I talked Geoff into three kids and now I can't have three. I'm only 35 and I'm going through menopause. None of our friends that are our age have any idea what this is like. Then we have doctor appointments where we have to discuss sexuality and vibrators and lubricants and all sorts of stuff that we shouldn't have to worry about at this age unless we want to "spice things up." Geoff is awesome as always, but I feel broken. I can't help but worry that this isn't what Geoff signed up for or that I'm going to be a let down. Eventually all this will settle down and we will be able to adjust to whatever our "new normal" will be in relation to all this too.

Cancer chain quote of the day:

"Courage is fear that has said its prayers." -Dorothy Bernard